Every six months, Erica Packer steels herself for the latest round of exploratory tests — mammograms, MRIs, maybe a biopsy of her breast tissue.
Every day after the tests are done, she waits nervously for the results, the same thought buzzing in her head: "Is it this time? Is it this time?"
The former international model and ex-wife of one of Australia's richest men, James Packer, might appear genetically blessed, but she lives with the fear that she carries the same unidentified genetic mutation that caused the breast cancer that killed her mother, Sheelah, at 66, and almost all female relatives on her mother's side.
"Breast cancer has been a fatal thing in my family," says Erica, 46, from her home in London.
It's scary, she says, and the best she can do to mitigate the risk is endure the emotionally exhausting routine of having breast cancer screening every six months.
"I'm biopsied all the time. You don't know the results for days. So you're sort of put in this very vulnerable position," she tells Australian Story. "It's a bit like playing Russian roulette."
Erica's older sister, Jo Hunter, knows what it's like when those tests come back positive. At 39, and a mother to four young children, the Sydneysider was diagnosed with breast cancer. She had a double mastectomy and breast reconstruction. She's the only woman in the family to survive a breast cancer diagnosis.
It's clear, the sisters and scientists say, that susceptibility to breast cancer lurks within their family's DNA.
Some hereditary gene mutations that increase the risk of breast cancer are known. The BRCA1 and BRAC2 mutations are the most common and best known, gaining international focus when Hollywood actress, Angelina Jolie, revealed she had the BRCA1 gene mutation and had chosen to have a preventative double mastectomy.
Jo, now 50, was tested for those mutations a year after her diagnosis. She was not a carrier. The National Breast Cancer Foundation (NBCF) has dubbed these mystery genetic faults running through thousands of Australian families "missing matches".
"Jo and Erica's story is not an unfamiliar story," NBCF chief executive officer Cleola Anderiesz says. "There are many, many Australian families who have a very similar story."
In the past decade, however, vast advances have been made in the field. Women can now be tested for up to 10 genetic variants, with another 40-plus being researched at facilities such as Victoria's Peter MacCallum Cancer Centre.
Now Jo is being re-tested in the hope that these new discoveries in genetics can help solve the mystery that has dogged her family — and many others — for generations.
'Smacked in the face with your own mortality'
Erica doesn't seek the spotlight. The woman who once dated stage and screen star Jason Donovan, who jetted off to Jamaica and Cuba on exotic fashion shoots, who partied with Elton John, is happy now to keep a low-profile as she raises the children she shares with James; Indigo, 15, Jackson, 13, and Emmanuelle, 10.
But her quest for answers about genetic mutations is strong: strong enough for her to open the shutters on her private life in a bid to put a spotlight on the ongoing research into genetic mutations and the need to fund it.
"I feel very passionate about it because this is our family," Erica says. "We're one of the missing matches and there's so many families in this country, 100,000 Aussies probably, in the same boat.
"If we can get these genetic causes and find out which specific one I might have, my daughters might have, anyone can have, then you can also not go through all this worry."
She had a big scare last year. Heading off on holidays, she and the kids had already boarded the plane when her doctor called to say the results of recent testing were "not good". It took more than a month of anxiety – as further tests were organised in foreign countries – before she was given the all clear.
"You're suddenly smacked in the face with your own mortality and being a single mum of three kids and what that meant for our lives and what we were going to do. That uncertainty and that … fear."
Erica and Jo were living together in London in 1999 when that fear first touched their immediate family.
Jo, a nurse, had relocated with her doctor husband, David Hunter, and their then two-year-old son, Jordan, while Erica was jetting about as a model — then coming back to London to share a bedroom with Jordan and his purple Teletubby toy.
Then came the shocking news: their mother had breast cancer. Sheelah, the no-nonsense woman who raised her three children in Gunnedah, north-eastern NSW with solicitor husband, Michael, was adamant her daughters stay in London for the time being. Their brother, Billy, was able to come home to be with his parents as Sheelah had a mastectomy, chemotherapy and radiation therapy.
Despite a prognosis that she would only live a few months, Sheelah went into remission. Life went on. Jo and David moved to Boston, US, adding two boys and a girl to their family.
Losing Sheelah and backing a cause
Erica's life was hitting some high notes, too: she embarked on a singing career, releasing an album. And she was dating the "funny and charming and very dynamic" James, the son of the late media mogul, Kerry Packer.
"It's a very big life with James," Erica says. "It was amazing to be a part of that, getting to meet all these world leaders and fascinating people, these big brains and people that are changing the world."
Come 2007, Erica and James were married at a private ceremony followed by a lavish celebration held on the French Riviera. Her mum, Sheelah was there, of course, but doing her best to hide intense back pain.
On her return to Australia, Sheelah learned the cancer was back. It had metastasised through her pelvis and lung. By 2011, it was in her liver. That same year, Jo was diagnosed with breast cancer.
"As the saying goes," says Jo, "when it rains, it pours. It sure poured."
Jo's cancer was picked up early and the double mastectomy has minimised the risk of its return. But Sheelah had run out of treatment options.
Late in 2011, the extended family gathered onboard the Packer family yacht in Fiji and with her family around her, Sheelah died.
"She went to bed and she didn't end up getting up again," Erica says. "As tough as that time was, we all feel really grateful that we could be there with her on the boat as she passed and holding her hand and giving her a lot of love."
Two years later, Erica and James separated. But, Erica says, there's still a lot of love between them.
"Divorce is never fun for any couple," she says. "And there's obviously speed bumps in the road and it's always tricky and you've got to navigate your way through.
"But I'm really proud of the fact that we've worked really hard to maintain a good relationship and a respectful relationship and a caring relationship because we both love our three kids so much and we have a lot of love for each other still.
"We found such a lovely way to co-parent and we take care of each other in how we each co-parent the kids," says Erica, who remains close to James' mother, Ros, and sister Gretel. "And I'm grateful for the support that James gives me."
Now, Erica is settling back into London where she and the kids recently moved after spending nine years in Los Angeles. The children's upbringing, with the wealth of the Packer family behind them, is vastly different to her childhood, when going out for a meal at the Gunnedah Chinese restaurant was a rare and special event, but she tries to "create that sense of love and safety and security that I was fortunate to have as a kid".
She's an ambassador for UNICEF Australia, most recently working alongside the Moriarty Foundation to bring early childhood centres to Indigenous communities in the Northern Territory, and is still involved in the fashion industry.
Then there's her work with the National Breast Cancer Foundation. It's been a 25-year association, alongside Jo and their late mum, Sheelah. It's a family thing.
Why Jo wants to 'show people her boobs'
Jo knows that early detection of breast cancer and targeted treatment saves lives, with the five-year survival rate increasing from 76 per cent to 92 per cent since around the time her mother was diagnosed.
She often visits women who have recently learned they have breast cancer to mentor them through their treatment.
In fact, Jo is so proud of her breast reconstruction that she will, as Erica puts it, "show them her boobs".
"I think there was a joke at one stage," recalls Jo, "that there wasn't a person left in Sydney that hadn't seen my breasts."
"The Peep Show Queen," jokes Erica. "Who knew?"
Nothing quite as revealing is required for Jo's new round of genetic testing: just a simple blood or saliva test.
Jo's test for the currently confirmed eight to 10 genetic mutations was done through the Peter MacCallum Cancer Centre, but one of its leading researchers, Professor Ian Campbell, emphasises that no matter where a woman – or man — lives, they can access these tests.
If a patient, or their GP, suspects they have, or are at risk of, familial breast cancer, a GP can organise for testing kits to be posted. "That DNA can be sent to the laboratory to get that test so it doesn't matter whether you live in the CBD or some outback town," he explains. Genetic counselling can be provided face-to face at specialised familial cancer centres in every metropolitan city, or through video-conferencing.
For every 100 women who get breast cancer, Professor Campbell says, about 10 to 15 of them will have an inherited gene mutation. Up to 40 per cent of those women will be able to learn the type of mutation through today's advanced tests. But for the other 60 per cent, "it's a mystery".
It's a mystery the Peter MacCallum Cancer Centre is at the forefront of trying to solve, with the help of funding from a variety of sources, including the National Breast Cancer Foundation. Its special ingredient is the women of Australia: 9,000 of them with an unexplained hereditary breast cancer, along with tens of thousands of others without breast cancer used as control cases.
"The research we're doing here we believe is unique in the world in that we have a very large number of women who are part of our cohort who have been tested for all the known genes, but returned a negative result," Professor Campbell says. "Those women have kindly given us permission to look deeply at their genes to see if we can find an explanation."
As a result, another 40-plus genetic mutations that may cause breast cancer are under examination, identified by advances in technology that enable machines to read up to 10 billion DNA sequences overnight.
"That's absolutely transformed how we could do the research looking at familial breast cancer," he says. But, he cautions, there's still more work to be done to confirm the link between these 40-plus genetic errors and cancer.
Many of the women in the study are referred to Professor Campbell's research by his colleague Professor Paul James, the director of the centre's familial cancer clinic.
Professor James says the value of pinpointing these genetic mutations is targeted testing and treatment. "If we can identify your risk successfully through genetics, then we can offer more," he says. "Earlier screening, different types of screening like MRI … we can offer medications that can bring down your risk."
About 150 women die each year of breast cancer caused by unknown familial genetic errors, Professor James says, "that should have been preventable if we'd understood the underlying high-risk cause".
For now, the genetic fault that has haunted Jo, Erica and their family remains unknown, with results from Jo's recent testing for the eight to 10 known genetic mutations still being processed.
If Jo is found to have one of the genetic faults, Erica will undergo the same tests to determine if she is also a carrier. If it comes back positive, Erica's screening and treatment options will be clearer.
If nothing is found in Jo's tests, Erica's best chance of diagnosing cancer early will remain regular testing. "The good thing about it is if you're checked often enough," Erica says, "if cancer did develop, you can handle it."
But the search will go on. Jo is so eager to find answers, she plans to donate her genetic material to the Peter MacCallum Cancer Centre's research team, adding more valuable data for scientists to explore.
Much has been discovered in the past 10 years, with more to come, and these two sisters are in this search for the long haul – for themselves, their daughters and every person whose family tree has suffered way too many fallen branches.
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